Entries for January 2011

Joe has been invited to speak at many more venues this year. He spoke and shared Noah and Alexis's journey with Dopa Responsive Dystonia and their new journey with sequencing earlier this week. Actually, he spoke the morning Alexis had her surgery (Tuesday morning). It worked out really well as Alexis and I were able to really pray for him during the car ride to the hospital. &nb...

Alexis broke her thumb on Monday of last week (January 10th). She called me from the health office at school and told me she had an accident in basketball PE and she was certain she broke her thumb. However, she didn’t want to miss any school, so could I please schedule the appointment later. Well, at first I thought it may be jammed as it seemed she would be in greater pai...

Life Technologies, the company Joe works for, has been the driving force in the sequencing project for Noah and Alexis. It is Life Tech's DNA sequencing machines that were used by Baylor's College of Medicine to do the sequencing of their DNA, and they have supported us on many levels. Life Technologies has an annual Global Leadership Meeting, where the top 300 executives in the company, worldwide, gather to go over last year's successes, visions for the new year, etc. They asked Joe to speak on Thursday morning to share the story of Noah and Alexis, our journey with sequencing and the outcome. It was an incredible opportunity.

The kids and I prayed for Joe Wednesday night and God gave me some precious time to lift him up Thursday morning in prayer. God moved in mighty ways through Joe's time and touched many lives. It is our hope and prayer that everyone will have the same opportunity to be sequenced and more rare diseases will be identified through this technology.

When we first discovered that Noah and Alexis had Dystonia, I was adamant about acknowledging the fact that Noah had an MRI that showed brain damage in his ventricles. The damage that was found is a "definitive" diagnosis of Cerebral Palsy. The neurologists told me it didn't matter, that he definitely had Dystonia and they don't like to "double diagnose". I pushed the subject stating that it did matter. I wanted them to acknowledge that, by text book definition, Noah had Cerebral Palsy and Dystonia. This point was critical in my opinion and I wouldn't let it go. It wasn't until later, after speaking with many parents

Noah and Alexis started their new medication over the Christmas break. Alexis came down with bronchitis, so she got started a little later than Noah. We have already seen improvements after only a short period of time..it is truly incredible! Noah has been on the amino acid, 5 htp, for 15 days. We had him write a paragraph the day before he started his medication and then 10 days after starting on 5 htp. The improvement was significant. We have also noticed his eye-hand coordination has improved while playing ping pong with his sister as well as when he is playing volleyball. Alexis always beat Noah in ping pong, however, over the Christmas break, he beat her in multiple games and matches. This is HUGE:)!!
Alexis has been on the medication for 9 days. Her cough has improved tremendously and her breathing has been significantly better. We are very encouraged and hopeful that this new therapy will heal Alexis's breathing and coughing problems and she will be able to do all the things she loves to do, like running races, beating track records and living life to the fullest.